Every time I come across a article on MS the figures are way out on the people who’ve got MS 100000 more like 200000+ even on this site it says 100000 if the MS society can’t even get it right what chance we got.
On what do you base your figures, Nokia, and how do you know yours are more accurate?
Tina
The figures they use have been the same for about 2yrs so you telling meTina since 2yrs no one has been diagnosed with MS, and I’m not saying my figures are accurate like everything with MS it seems to be guess work !!!
Hate to say it, but folks with MS also die (not necessarily of MS). It’s probably not literally “one in, one out”, as people generally - including those with MS - have improving life expectancy. There may also be an increase in diagnoses, not because it’s getting more prevalent, but because diagnostic tools and techniques keep getting better. However, even with both those factors - and population growth as well - it doesn’t seem to justify an assumption that the numbers should really be double.
I agree that nobody is keeping accurate figures, because there’s no legal obligation to. That’s hardly the Society’s fault. What do you expect them to do about it?
The same is probably true of most other illnesses, like diabetes, heart disease, and all the many different types of cancer. I suspect organsisations working with them are also only using estimates, because there are very few diseases where cases - or even fatalities - have to be logged.
Plans for mass logging of the nation’s health, which would have given us a much better picture of how many people have got what, have been postponed (Scrapped?), because the inept way it was handled gave rise to privacy concerns - some of them justified.
So against that backdrop, who should be counting - and how? Not just MS, but any disease? How do we know what future healthcare priorities should be, if we don’t even know who’s got what, or keep stats about what needs they have?
So yes, I agree with you up to a point, but I don’t agree your “guess” is any better than the MS Society’s, and I also don’t think the problem is unique to MS. Overall, we don’t have a very good picture of what people’s health is like in this country, and initiatives to change that run up against civil liberties concerns. I personally think we have more to gain by being counted, than not, but I can appreciate people’s concerns about sensitive personal data ending up in the hands of private companies. It would have to be private companies, because the government doesn’t have the resources or expertise to build something like this “in house”.
Tina